Caregiving

Tough Conversations

Around the country, families are gathering for holiday celebrations, visiting loved ones, and discussing their plans for the coming year. Yet too often, families miss this opportunity to have the important – but difficult – conversations about older relatives’ wishes for their end-of-life care.

If an older family member develops a serious illness that impairs their decision-making capacity, loved ones will often face a host of challenging caregiving, medical, financial, and legal decisions. Establishing a relative’s wishes ahead of time, through frank and intimate discussions, provides vital guidance to navigate these issues. This not only ensures that caregiving and medical care match an individual’s values, but also helps adult children and others to avoid feelings of guilt, confusion, or anxiety, which often arise when they must make these choices unaided.

However, families frequently avoid talking about this subject, which can be uncomfortable and difficult to raise. In fact, though 90% of Americans say that talking with their loved ones about end-of-life care is important, only 27% have done so. Family members sometimes postpone conversations until a health problem arises, but that may already be too late for the affected individual to communicate – especially if Alzheimer’s or dementia affects their cognition.

However, there are ample resources and proven strategies to help adult children begin these conversations with their parents and other older adults. The Conversation Project provides a Conversation Starter Kit to steer the discussion, as well as a kit specifically for Alzheimer’s and dementia. These include questions to ask older relatives, potential conversation starters, and a list of important issues to address. AARP also offers useful tips for starting to talk about advanced care planning and end-of-life preferences.

Re-uniting with family for the holidays is an ideal time to broach this topic, and can also serve as the first warning of a decline in health, especially if relatives have not been in regular, close contact with an older adult. Though the details of these discussions will vary, there are a few general principles to keep in mind:

  • Plan ahead. Bringing up end-of-life choices can be daunting, but preparation helps to ensure both that you follow through and that you cover all the areas that are most important to you. Ahead of time, consider who you want to talk to, when would be best to talk, where would be most comfortable, and the topics you would like to discuss first. You can also plan your “opening lines” beforehand, or even bring written materials, if you feel they are appropriate for the situation.
  • Address key questions. Ideally, these conversations will provide practical takeaways for a range of issues, and could even result in detailed plans. However, even if you don’t reach this level of depth, it’s important to get answers for key questions related to medical care, end-of-life choices, and legal and financial matters. For example, do older relatives have any existing concerns about their health? Have they noticed recent changes in memory or thinking? Who should be involved in caregiving and end-of-life decisions? If the situation arises, do they want the full extent of medical intervention possible, or would they prefer more limited comfort care? Where would they like this phase of life to occur?
  • Have multiple conversations. A single talk cannot cover all the topics necessary for a complete understanding of end-of-life values and wishes. Older relatives will likely need to reflect on these important questions, alone or with others, before reaching a conclusion. Expect to have multiple conversations, and don’t create unnecessary pressure by attempting to address every possible scenario in a single discussion. Once you bring up the topic for the first time, later conversations will likely be easier and more focused.

Honest, two-way communication is the best way to prepare a family for the tough decisions that accompany an older relative’s end-of-life care. By establishing a shared understanding about this phase of life, families can ensure that a loved ones’ wishes are respected, while also reducing the stress and emotional strain of this period for other relatives. The weeks ahead offer an excellent opportunity to take a first – or fifth – step towards this reassuring,

Guest Blog: Lisa Winstel, COO, Caregiver Action Network

November is National Family Caregivers Month: a time to rally in support of the 90 million Americans who provide care to loved ones, especially those facing the complex and exhausting challenges of Alzheimer’s.

Caregiver Action Network, a We Won’t Wait campaign partner, is spearheading National Family Caregivers Month with activities and outreach around the theme, “Take Care to Give Care.” This addresses a central dilemma for caregivers: providing care strains their own health, finances, and mental well-being. In response, Caregiver Action Network’s awareness effort encourages all caregivers to prioritize their personal well-being and calls on communities to share the care burden.

In this year’s Presidential Proclamation, President Obama echoes this message, saying that “our Nation was founded on the fundamental ideal that we all do better when we look out for one another...During National Family Caregivers Month, we reaffirm our support for those who give of themselves to be there for their family, friends, and neighbors in challenging times.”

Caregiving’s physical, emotional, and financial toll is especially severe for Alzheimer’s. These caregivers – two-thirds of whom are women – struggle with increased medical costs, disrupted careers, and compromised brain health. Responsibilities and costs mount as the disease progresses, often requiring around-the-clock care for a decade or more.

Fortunately, there are a range of proven strategies for a healthy caregiving balance. To manage the burden, caregivers can communicate with their support network, prioritize certain tasks, and delegate when possible. The essentials of wellness, such as nutrition, exercise, and rest, are doubly important for caregivers; they enable high-quality, sustained care, while mitigating health impacts. And for the unique behavioral and emotional changes that comes with Alzheimer’s, certain approaches can ease daily frustrations for both the caregiver and the person with Alzheimer’s.

Caregiver Action Network has published a useful set of tips, facts, and considerations for caregivers. Available here, they are:

·      Caregiving can be a stressful job. Most family caregivers say they feel stressed providing care for a loved one. With all of their caregiving responsibilities – from managing medications to arranging doctor appointments to planning meals – caregivers too often put themselves last.

·      The stress of caregiving impacts your own health. One out of five caregivers admit they have sacrificed their own physical health while caring for a loved one. Due to stress, family caregivers have a disproportionate number of health and emotional problems. They are twice as likely to suffer depression and are at increased risk for many other chronic conditions.

·      Proper nutrition helps promote good health. Ensuring that you are getting proper nutrition is key to help maintain your strength, energy and stamina, as well as strengthening your immune system. Maintaining a healthy diet is one of the most powerful things you can do to take care of yourself and keep a positive attitude overall.

·      Ensuring good nutrition for your loved one helps make care easier. As many as half of all older adults are at risk for malnutrition. Good nutrition can help maintain muscle health, support recovery, and reduce risk for re-hospitalization – which may help make your care of a loved one easier.

·      Remember: “Rest. Recharge. Respite.” People think of respite as a luxury, but considering caregivers’ higher risk for health issues from chronic stress, those risks can be a lot costlier than some time away to recharge. The chance to take a breather, the opportunity to re-energize, is vital in order for you to be as good a caregiver tomorrow as you were today.

These keys can power women and families during the Alzheimer’s journey. Please keep them in mind and share with your network, whether you are a caregiver yourself or know affected individuals. These tools are critical for maximizing the quality of Alzheimer’s care, while minimizing the impact on caregivers’ health and opportunities.